National Best Practice Guidelines for Informing Families of their Child’s Disability

Author(s): Alison Harnett, Brendan Dolan, Suzanne Guerin, Edel Tierney, Maria Walls

Department: National Federation of Voluntary Bodies Providing Services to People with Intellectual Disabilities, Research Department

Keywords: Informing Families, Childhood disability, Diagnosis, Parents, Children with disability, Communication skills, Training, Disclosure, ‘Breaking Bad News’

Reported: Articles about the Informing Families research and guidelines were written in the following publications in 2008: • Psychiatric Nurses Association: PNA Journal, Vol 6 Issue 1 Winter/Spring 2008 "Federation of Voluntary Bodies Providing Services to People with Informing Families National Best Practice Guidelines" Pg 29-34 • National Council for the Professional Development of Nursing and Midwifery: NCNM Review, Spring/Summer 2008 "Best Practice in Informing Families of their Child's Disability" Pg. 16 • Frontline Magazine, Issue No. 73 2008 "Words you never forget - Best practice guidelines to support professionals when informing families of their child's disability" Pg 8-10 • Down Syndrome Ireland, Summer 2008 Magazine "Launch by National Federation of Voluntary Bodies" Author Orla Crowe, Pg 28. Citations • RehabCare 2008: “An investigation into the social support needs of families who experience rare disorders on the island of Ireland”. This report recommended the implementation of the Informing Families Guidelines as one of its 9 key recommendations. • National Council for the Professional Development of Nursing and Midwifery and Nursing and Midwifery Planning & Development Unit, HSE (South), (2008) Clinical Nurse/Midwife Specialist Role Resource Pack 2nd Edition. Kilkenny

(29 Jul 2009)

Aim: To develop evidence-based National Best Practice Guidelines, education, and training; on appropriate procedures to inform families of their child’s disability (or suspected disability). Implementation of these Guidelines will:
1. Ensure improved outcomes at disclosure for families
2. Provide improved support, guidance, education and training for professionals communicating the news
The Guidelines relate to intellectual, physical, sensory disabilities or autistic spectrum disorders, and concerns raised during pregnancy, at birth and evolving diagnoses.
Method: Qualitative data were collected from seven focus groups with parents of children with disabilities in Ireland, and 15 focus groups with disciplines of professionals involved in disclosure or supporting parents immediately thereafter. Quantative data were collected through a national postal questionnaire survey of 584 parents and 1588 professionals. (Sampling made use of the National Intellectual Disability Database).
Results: Overall satisfaction with disclosure was comparable with previous studies. Deficits in practice were identified relating to the physical and social setting for disclosure; communication; information and support, culture and language, referral, organisation and planning; training, education, and support for Professionals.
Conclusions: The recommendations flowing from these findings were collated to produce the National Guidelines.

National Best Practice Guidelines for Informing Families of their Child’s Disability

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